Findings from the UK NHS Long COVID Clinic treating patients with neurological symptoms

livinglighter

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This is a great video featuring the UK doctors who set up a long COVID clinic treating patients with neurological symptoms at the end of last year.

They explain their finding so far, support/treatments they’re providing (which also incorporates techniques developed for ME/CFS) and recommendations for research.

I must say watching this made me feel like an outsider peering into what should be currently available for pwME.

Just goes to show here in the UK the fatigue clinics are only equipped to aid with the one symptom of fatigue which of course can derive from many different illnesses. A skilled doctor / multidisciplinary team is also required to sign post you for all of the other physical symptoms.

**** Please note exercise intolerance has been found ****

GET and CBT does not treat exercise intolerance. Some aspects of GET can help you to manage to live with it depending on your threshold for exertion. CBT can also identify and reduce unhelpful mental exertion which exacerbates energy wastage. But again will not cure exercise intolerance.

 
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Countrygirl

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Here is another video with Dr Wentzel who has created the 'stack' which he says improves/cures Long Covid which he claims is a form of secondary pellagra. It consists of the flushing form of niacin plus co-factors......zinc, selenium, vits C and D, and quercetin. His theory (similar to Prof Ron Davies in ME) is that the tryptophan pathway is dysregulated. Dr Wentzel says that lack of B3 leads to the over-utilisation of tryptophan and depletion of serotonin in the body. He explains that the depletion of B3 causes the low levels of ATP, the triggering of MCAS, and dysautonomia. (Have people with ME tried the stack with any success? It is crucial to use the exact quantities as devised by Dr Wentzal who cured himself and his colleagues of Long Covid. )

You will hear Dr Wentzel talking here:
 

lenora

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Very interesting (& complicated) causes of Long Haul Syndrome. It will be interesting to see how this fares over the long term (or long haul). If the reasons are as stated, then it would certainly explain a lot of the symptoms so many of us suffer (sleep disorders per example).

I would be interested in how many people suffer all of the symptoms....anyone else? It's a beginning, and I thank everyone who brought it to our attention. Yours, Lenora.
 
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This gives me such mixed feelings. I'm really pleased that this work is being done, with really joined up thinking across medical disciplines.

However, this service would have been an absolute godsend for pwME many years ago. Very frustrating that's it's not been done before.

So much of what they discussed is familiar to me, and it's all information that I've had to struggle to research myself, using energy I don't really have. Often finding something that would be useful to test for, but the NHS won't offer it!

Anyway, ranting aside, is anyone aware of any UK or global activism to ask the health service to please, please provide something like this for ME?

*Edit to say that I truly am pleased for those with long covid who are able to access this, it seems promising*
 

lenora

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This gives me such mixed feelings. I'm really pleased that this work is being done, with really joined up thinking across medical disciplines.

However, this service would have been an absolute godsend for pwME many years ago. Very frustrating that's it's not been done before.

So much of what they discussed is familiar to me, and it's all information that I've had to struggle to research myself, using energy I don't really have. Often finding something that would be useful to test for, but the NHS won't offer it!

Anyway, ranting aside, is anyone aware of any UK or global activism to ask the health service to please, please provide something like this for ME?

*Edit to say that I truly am pleased for those with long covid who are able to access this, it seems promising*

Yes, @Donsboig, it would have been nice to have had this information many years ago. However, as I've often thought, medicine (including research) is comprised of many guinea pigs. We did our part, however small it may have seemed in today's world, by simply having the illness, bearing it and note being made of the symptoms as they slowly eked out. We also gave a voice to this illness....others were just louder at the time.

Just like so many other illnesses, early cancer victims, those with cystic fibrosis, heart disease...we're all caught up in this thing called humanity. You aren't alone. Yours, Lenora.
 

livinglighter

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This gives me such mixed feelings. I'm really pleased that this work is being done, with really joined up thinking across medical disciplines.
@Donsboig It's ok to feel this way, I do the same and it's because ME/CFS is a debilitating, physically real and life-changing condition, where patients haven't been given access to the correct support and treatment.

I feel what we are witnessing here is possibly the largest epidemic of post-viral fatigue and ME/CFS or another post-viral illness that is overtly strikingly similar to ME/CFS, but there is access to treatment because the cause is COVID-19.

I can't remember the findings in this video, but if there is anything you also want to test for due to your symptoms, you can request your GP refers you to a specialist who does it. According to the NICE Guidelines GP's should do this once you have a ME diagnosis as part of the individualised management plan. But there is a lack of information sharing between ME/CFS specialist services and primary care, plus an unhelpful notion often reinforced by fatigue clinics that the illness is a functional disorder.
This is in part true........ more people diagnosed with ME/CFS do not have organic symptoms due to the issue caused by current clinical ME/CFS diagnostic criteria. It was found that 1% of patients that attended fatigue clinic had organic neurological symptoms.

Without waiting for objective testing to be finalised for ME/CFS, you can buy an HRV monitor that can pick up sympathetic and parasympathetic abnormalities which may provide access to an autonomics specialist. Some pwME have already done this. You can show the results to a GP if you feel they will dismiss exercise intolerance as being anxiety induced. You can also ask for a referral to an endocrinologist to check cortisol levels due to sleep disturbances, etc. but of course, you want the referrals requested to correlate with your symptoms that you need to tell your GP about. Plus, there needs to be objective tests performed on pwME or Long Covid that shows abnormalities available for it - which requires research....... The tilt table test, for example, can show autonomic abnormalities in pwME.

However, this service would have been an absolute godsend for pwME many years ago. Very frustrating that's it's not been done before.
100% agreed. I wish this was available for people with ME both currently and many years ago. But from my experience you can access further help, but I believe it depends whether medical professional decision-makers think your symptoms are real. For example, I have done several posts about my experiences, as I am seeing an autonomic specialist neurologist on the NHS. I was referred to one before, I, myself, requested a referral to the fatigue clinic. My GP at the time was aware of the sudden onset of neurological symptoms I have expressed without suffering from a mental health condition and referred me to a neurologist. My later CFS diagnosis then interfered with receiving thorough investigations, as once I was diagnosed with CFS the neurologist was the first person to tell me the diagnosis means my symptoms are all in my head and became reluctant to perform autonomic testing. However, during an appointment where he attempted to discharge me, I told him about my new onset of symptoms which must frequently happen with dysautonomia, as that is what my next upcoming tests are for. He went on further to explain the ME/CFS diagnostic criteria means there are different patient subsets, some without neurological symptoms.

I've now found that by making your GP aware of the physical basis of the condition helps to get referrals made. My GP has now received a detailed explanation of what ME/CFS is from advocates at the charity Action for ME, NHS secondary/specialist care and private ME/CFS specialists.

So much of what they discussed is familiar to me, and it's all information that I've had to struggle to research myself, using energy I don't really have. Often finding something that would be useful to test for, but the NHS won't offer it!
I know exactly what you mean, it's so hard doing the research and then suffering for it later. Some testing is available on the NHS, but it's tricky as no one is performing the tests designed specifically for ME so results can be variable, etc.

Anyway, ranting aside, is anyone aware of any UK or global activism to ask the health service to please, please provide something like this for ME?

*Edit to say that I truly am pleased for those with long covid who are able to access this, it seems promising*
I'm interested in this too. Who is campaigning about pwME needing this? At this rate, it seems down to us to get the ball rolling. The possibility of both Long Covid and ME being the same is being recognised but nothing is being done...... I had a consultation with an infectious disease and ME/CFS specialist this week, who is now doing Long Covid research who agreed that Long Covid is very likely to be the same.

Any referrals you do ask for, try and request them with doctors treating long covid patients which is what I’m currently doing. It doesn't guarantee anything but may get you a step closer to more testing or better sign posting.
 
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lenora

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I now realize that the last few words in my last sentence could be taken more ways than one. @Donsboig, I'm certainly not advocating that you not feel discouraged b/c a cause wasn't found sooner....there's a whole lot of suffering that goes along with this illness.

Perhaps in order to salvage myself during this trek, I had to make some sense out of how we played a role in this process. I guess my answer to that is somewhat apparent. How long have you been ill? That also plays a role in how long it takes to come to terms with the illness.

It would be nice if the latest research could help those still in a position to benefit from it. I hope you're one of them! Yours, Lenora.
 
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@lenora thank you for your kind and philosophical post, I understood and completely agree with your sentiment :)

@livinglighter thanks for your thoughtful reply. It was a bit of an emotional ranty post, and I have actually been quite fortunate in having a gp who is willing to refer me for things. Although my testing for CCI was done privately as it was extremely speculative with no clear symptoms (it turns out I have severely squashed jugular veins and that is currently my main area to investigate).

I guess what I was feeling particularly sore about was that after 6 months my gp said he'd reached the end of his knowledge and had no further suggestions. His support in writing referrals was invaluable but I had to do all the research myself. For example, I only became aware of HRV monitoring last year, after being ill for about 2 years. I have dreamt of being able to walk into a specialist centre and have them run through a huge check list of things to test, rather than fight for scraps of knowledge through my own research, and then wonder if it is worth spending the money for this or that speculative test. Or whether it's worth bothering the go yet again, not wanting to become a "problem patient".

Anyway, in the spectrum of support that pwME receive I have been very lucky overall, and I am grateful for it. I just hope that some of the approach and findings from long covid support finds its way into our world too!
 

livinglighter

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@livinglighter thanks for your thoughtful reply. It was a bit of an emotional ranty post, and I have actually been quite fortunate in having a gp who is willing to refer me for things. Although my testing for CCI was done privately as it was extremely speculative with no clear symptoms (it turns out I have severely squashed jugular veins and that is currently my main area to investigate).
That's amazing! Your persistence and hard work paid off and you have found abnormalities I hope this leads to treatment that resolves symptoms.

I guess what I was feeling particularly sore about was that after 6 months my gp said he'd reached the end of his knowledge and had no further suggestions. His support in writing referrals was invaluable but I had to do all the research myself. For example, I only became aware of HRV monitoring last year, after being ill for about 2 years. I have dreamt of being able to walk into a specialist centre and have them run through a huge check list of things to test, rather than fight for scraps of knowledge through my own research, and then wonder if it is worth spending the money for this or that speculative test. Or whether it's worth bothering the go yet again, not wanting to become a "problem patient".
I agree, it's a dream to have all these resources for ME patients like it should be. I think it has been traumatising to have to fight for scraps of knowledge through doing your own research, and then wondering if it is worth spending the money to then only get non-desirable results. This is currently life for pwME, you either push for help or wait for help that may reach you one day. I think you should let your GP know the general limited clinical knowledge of the multisystemic condition makes you feel like you are coming across as a "problem patient", just mention it casually and gauge their response. Or if you are in the UK, you may benefit from having someone like Dr Weir providing your GP with information outlining the complexity of the illness. I guess you have to weigh up the pros and the cons about not coming across as a problem patient, but I think having the correct specialist input can mitigate that opinion........

Anyway, in the spectrum of support that pwME receive I have been very lucky overall, and I am grateful for it. I just hope that some of the approach and findings from long covid support finds its way into our world too!
Yes, it sounds like you've been lucky and created your own luck. I see it like this, the long covid research should start being of use for pwME. However, if it takes too long we will have to advocate for ourselves to receive it. I just started taking note of HRV, as I've deteriorated so that's one of my many next steps to try and demonstrate my impairments/similarities to Long covid amongst healthcare professionals.
 
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lenora

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That's amazing! You're persistence and hard work paid off and you have found abnormalities I hope this leads to treatment that resolves symptoms.



I agree, it's a dream to have all these resources for ME patients like it should be. I think it has been traumatising to have to fight for scraps of knowledge through doing your own research, and then wondering if it is worth spending the money to then only get non-desirable results. This is currently life for pwME, you either push for help or wait for help that may reach you one day. I think you should let your GP know the general limited clinical knowledge of the multisystemic condition makes you feel like you are coming across as a "problem patient", just mention it casually and gauge their response. Or if you are in the UK, you may benefit from having someone like Dr Weir providing your GP with information outlining the complexity of the illness. I guess you have to weigh up the pros and the cons about not coming across as a problem patient, but I think having the correct specialist input can mitigate that opinion........



Yes, it sounds like you've been lucky and created your own luck. I see it like this, the long covid research should start being of use for pwME. However, if it takes too long we will have to advocate for ourselves to receive it. I just started taking note of HRV, as I've deteriorated so that's one of my many next steps to try and demonstrate my impairments/similarities to Long covid amongst healthcare professionals.

This is a perfect example of what everyone needs....A doctor who is at least kind and is helpful in referrals, and above...listens. We've been looking for a cure for more years than I care to remember. But things are going at a very fast pace now. There are tests that I've never even heard of and I would encourage all of you to take advantage of what you can, and remember that someone else will hopefully have an answer tomorrow. It's a time consuming process and, unfortunately, can cost a lot of money.

I can assure you that coming from when I was first diagnosed, this is tremendous progress. So be hopeful. Lobby for funds (those of you who have the energy), donate if you can and expect bad days, b/c they certainly come.

So now you're the leaders, it's just that you never thought you'd have to lead this particular fight. I understand. I look back with it all in pride, however, I did something for others and I can't tell you the pay-off that has brought to my heart. Yours, Lenora.
 

BrightCandle

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The NHS is so Jekyll and Hyde. On the one hand you have long haulers who appear from the research (in the USA) to be developing ME/CFS but the UK is quietly ignoring that and treading the same ground while completely ignoring all the ME/CS patients completely. I think worse that a friend is a long hauler and is getting all this support, but me as an ME patient that caught covid and is no much worse can not. Had I not been sick before hand they would have done something other than offer me GET/CBT for the third time last November!
 
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It's disgusting how little help you get in the UK now. It is NOT a coincidence that hoosierfans, the girl in the Brain On Fire Film and maybe Lenora (I don't know Lenora's circumstances so can't comment) had the money to pay for all the testing, or were in cities with very good insurance policies and access to the right doctors to get them the right level of care.

It's an expensive business and it shouldn't be. It's really wrong.
 
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It's disgusting how little help you get in the UK now. It is NOT a coincidence that hoosierfans, the girl in the Brain On Fire Film and maybe Lenora (I don't know Lenora's circumstances so can't comment) had the money to pay for all the testing, or were in cities with very good insurance policies and access to the right doctors to get them the right level of care.
Doctors are as stupid as any one of us, and the alternative is true as well. :D
 
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